Re: Introduction - Jordan n

[Guest guest]

Welcome, again, Jordan -

I applaud you for trying to get answers for your daughter and for thinking

deeply about her situation. I will try to respond to your note as best I can.

" Started dropping off the charts at 6 months of age. Diagnosed FTT...she has

been eating well...29 months old on 3-9-06 and 31 " and 23.4LBS "

So, she is still below the 5th percentile in every dimension. Yes? If she is

eating well, she must have an underlying medical problem to be < 5th percentile.

Regardless of whether or not she is eating well, she has fallen below the charts

and needs medical attention -- and I see that you are trying to get her help.

" ...diagnosed THOI and wanted to do an IVIG trial... "

Transient hypogam is usually a retrospective diagnosis -- you can't

catagorically say that it is, or is not, transient until time has passed.

Though your daughter's IgG has gone up (yea!), it is still not considered within

" normal " limits yet. IVIG is NOT given for the run of the mill transient

patients -- but your child is FTT which complicates the picture.

There is another mom here who will be starting IVIG for low Igs and FTT.

Perhaps you can connect with her? Her little girl has not had a

life-threatening infection but, as Dale points out, each child manifests their

immune deficiencies differently -- some have chronic low grade infections, some

joint pain, some inflammatory bowel disease, some growth failure, etc. It is a

myth that IVIG is only for those that have had a brush with a life threatening

infection -- and a responsible immunologist knows this.

Anyhow, I can understand how IVIG may be used to help the child get out of the

cycle of sinus/ear infections and malnutrition that may be associated with

growth failure. Perhaps this was part of the reason why your NYC immunos were

aggressive? Or, maybe they wanted to see if IVIG might prevent growth problems?

Hmmm...I just don't know. To protect the health of the child, I can see how an

immuno might consider ordering an IVIG trial for a " transient " case before doing

other types of extensive, expensive, and invasive testing. Also, some doctors

are very risk averse and would rather treat than face possible medical neglect

on their part. I have not met many of these types, though.

" infectious disease doctor also looked at her charts going back to birth and

advised against IVIG at the time...she made good titiers to prevnar... "

I don't know what to make of this. Did the infectious disease doc address the

growth problems, low Igs, and communiate with the immuno? You have to be

careful that there are no too many cooks in the kitchen. It can really confuse

us parents.

" Elle gets sick like other kids, ear infections, sinus infections, cold

nothing major, knock on wood... "

As you know, growth problems are not a minor issue and it may not be wise to

compare her to other " normal " kids who are at a normal weight/height.

" seeing another endo in April for growth hormone testing...Debating on seeing

another Immunologist. Any thoughts where to go from here? "

I would call the immune deficiency foundation and see what they suggest.

Also, I strongly encourage you to go back to the previous immuno for another

eval OR find an immuno that you can develop a long-term relationship with --

someone that will communicate with the endo and peds docs. You have access to

some of the best!

Endo and immune issues sometimes go hand in hand -- so you might want an

immuno on board. It is noteworthy that certain forms of hypogam are linked to

growth hormone deficiency -- and sometimes malnutrition. You may have a chicken

or the egg problem that requires a doctor(s) who can look at all the pieces and

solve the puzzle. It is not clear that the infectious disease doc is seeing a

whole picture.

Hope Elle feels better soon,

(mom to CVIDer)

[Guest guest]

> There is another mom here who will be starting IVIG for low Igs

and FTT. Perhaps you can connect with her?

Jordan,

That would be me! Ana is 14 months old and has been sick since she

was 10 weeks. They first checked her immune system at six months

because I was at the doc with her every couple days with something

new and I was freaked out. She has not grown now since she was

eight months old. We have gone the food allergy route, the GI

route, we are even going to a feeding clinic just in case her eating

problems are behavioral/sensory(which I don't think they are). But

the thing is, even when she eats like a pig between infections, she

doesn't grow.

She has not had any major infections (menengitis etc). She did have

RSV and two pneumonia's as a result, but one more month and we are

past the year mark that they say is the big deal with the RSV.

Other than that she just has ear infection after ear infection, with

sinus infections and colds/flus thrown in there just for fun. Her

ped. is wonderful but is overwhelmed by her. He has connected with

the consulting immunologist at IDF, which he said was really

helpful.

All that said, I have been torn, as you seem to be, with the IGIV

too. We are still hoping this is transient, but they told us we

will not know for quite a few years. Now, I have a background of

schooling in child development/psychology, so the question for me

was what kind of quality of life I wanted her to have until we

figured out of it was transient...and what long term effects might

there be to waiting and seeing? Once the FTT diagnosis was thrown

in there, and with the help of this board, I accepted that IGIV

would be best for her at this point. I had to accept that that is

not committing to it for her entire life. Hopefully in five years

or so we can say.. " hey, remember when you used to have to go for

your infusions Ana? I'm glad we don't have to do that anymore " But

for now, she is not growing, she is not healthy, and if there is a

treatment that can help her until her little body catches up, I feel

I have to give her the chance to take advantage of it.

Long answer...!!! Please keep asking questions, email me off line

if you want, or we can connect by phone my # is 651-731-2032. As

parents you know what is best for Elle, but do seek out the opinion

of as many docs, I would suggest an second immunologist, as you need

to to feel comfortable with the best option for her, medically

speaking, even if that is not the happiest or easiest solution. It

sounds like Elle is very lucky to have you, I truly hope she grows

out of this. But look at the now, and go off of that to decide what

she needs.

Ana 14mo, IgG def, FTT, reflux? and ????

[Guest guest]

I thank you all for taking the time to read up on Elle's issue, it

really helps to hear from people who are in similar boats.

I have made an appointment with Dr Ann Michelis of HUMC in NJ.

She was recommended by the http://www.info4pi.org/ site.

HUMC has also just opened a new center just for kids with Immumo

problems.

We will be seeing her soon (next week or two)as it turns out my

wife's good friend from childhood works in the department and

reports to this doctor.

I figure it is always good to have an " in " .

The reason we chose not to go with the NYC Immunos follows

Dr Arie stein

Diagnosed Digeorge syndrome based on appearance. (found to be false

by genetic testing)

Diagnosed Heart Mumer (5 other doctors were never able to hear it)

That was enough of him for us.

Dr Olesky (his primary intrest in pediatricHIV)

Two nurses at his office were unable to draw blood from her

He ended up taking the blood via external juggular stick (while we

consented) he did not explain who tramatic this was going to be for

her.

Quest labs have drawn blood from her over 10 times with zero issues.

He also said IVIG has no danger and can be done at home with no

issues. This is in a one year old baby.

That was enough of him for us.

Her FTT was based on food intake according to her GI.

She consumed ZERO food besides forumula (tired them all, alimentim,

nutramagin, neocate) she ended up on Isomil amd still drinks it

today.

She started eating 1 day after we stopped her high dose Previced

compound...against medical advice.

The reflux did not return.

Now she eats well, though still less then optimal.

She has gained 8 lbs and grown 6 inches I believe since we stoppep

the meds.

I will update you all as soon as we she Dr Michelis.

>

> Jordan and ,

>

> was briefly FTT as an infant....Our story is very

> complicated....he suffered from horrible mouth sore and wasn't

gaining

> real well....but on the charts to speak of, but smaller than all my

> other kids...but I was giving him 2 to 3 cans of pediasure a

> day...special K bars, monster cookies, string cheese....pushing

food as

> much as I could...

>

> Since SCIG>>>>we have been to the clinic twice ( in three months)

and

> one of those was a well check....he has gained at least a pound if

not

> two......he is eating a lot.....happy, energy...sleeping

better....less

> moody, no more " my legs out of batteries " ......the change in the

quality

> of life has been tremendous....

>

> Our hematologist said that 's response and improvement in

quality

> of life should make people think again about doing a trial of IVIG

or

> SCIG and seeing if that does improve things...

>

> If you try it and things aren't dramatically better...or if you

have

> more side effects then benefits...you can stop...

>

> But at this point, don't you dare suggest to me to take

off...as

> we are so happy with how he has done.

>

>

>

>

>

> Re: Introduction - Jordan n

>

>

> > There is another mom here who will be starting IVIG for low Igs

> and FTT. Perhaps you can connect with her?

>

> Jordan,

>

> That would be me! Ana is 14 months old and has been sick since

she

> was 10 weeks. They first checked her immune system at six months

> because I was at the doc with her every couple days with something

> new and I was freaked out. She has not grown now since she was

> eight months old. We have gone the food allergy route, the GI

> route, we are even going to a feeding clinic just in case her

eating

> problems are behavioral/sensory(which I don't think they are).

But

> the thing is, even when she eats like a pig between infections,

she

> doesn't grow.

>

> She has not had any major infections (menengitis etc). She did

have

> RSV and two pneumonia's as a result, but one more month and we are

> past the year mark that they say is the big deal with the RSV.

> Other than that she just has ear infection after ear infection,

with

> sinus infections and colds/flus thrown in there just for fun. Her

> ped. is wonderful but is overwhelmed by her. He has connected

with

> the consulting immunologist at IDF, which he said was really

> helpful.

>

> All that said, I have been torn, as you seem to be, with the IGIV

> too. We are still hoping this is transient, but they told us we

> will not know for quite a few years. Now, I have a background of

> schooling in child development/psychology, so the question for me

> was what kind of quality of life I wanted her to have until we

> figured out of it was transient...and what long term effects might

> there be to waiting and seeing? Once the FTT diagnosis was thrown

> in there, and with the help of this board, I accepted that IGIV

> would be best for her at this point. I had to accept that that is

> not committing to it for her entire life. Hopefully in five years

> or so we can say.. " hey, remember when you used to have to go for

> your infusions Ana? I'm glad we don't have to do that anymore "

But

> for now, she is not growing, she is not healthy, and if there is a

> treatment that can help her until her little body catches up, I

feel

> I have to give her the chance to take advantage of it.

>

> Long answer...!!! Please keep asking questions, email me off line

> if you want, or we can connect by phone my # is 651-731-2032. As

> parents you know what is best for Elle, but do seek out the

opinion

> of as many docs, I would suggest an second immunologist, as you

need

> to to feel comfortable with the best option for her, medically

> speaking, even if that is not the happiest or easiest solution.

It

> sounds like Elle is very lucky to have you, I truly hope she grows

> out of this. But look at the now, and go off of that to decide

what

> she needs.

>

>

>

> Ana 14mo, IgG def, FTT, reflux? and ????

>

>

>

>

>

> This forum is open to parents and caregivers of children diagnosed

with

> a Primary Immune Deficiency. Opinions or medical advice stated

here are

> the sole responsibility of the poster and should not be taken as

> professional advice.

>

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